| | Joined: Oct 2009 Posts: 5 Member | OP  Member
Joined: Oct 2009 Posts: 5 | hi my name is meanne and i am new to this fellowship of oc survivors and their caregivers/spouses/significnt others. i caught my scca of the oral/base of the tongue fairly early. i'm having surgery on thursday 10/29 and really don't know what to expect afterwards i think i'm having a partial glossectomy on the r lateral side of my tongue. i wish i had more info rearding post op and what to expect i would appreciate any info/personal stories etc. you all could give methanks a lot | | | | | Joined: Sep 2009 Posts: 31 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Sep 2009 Posts: 31 | Hi meanne
Really sorry to hear your news but there are loads of great people on this site who will be able to help & reassure you & more importantly lift your spirits.
M xx
Surgery to remove tumour from on top of saliva gland 3rd August 09. Biopsy revealed adinoid cystic carcanoma. Further surgery 28th September 09 to remove saliva gland, nerve to top lip (buccal branch) & scar tissue.
Radiotherapy finished 30 Dec 2009 IXA x 33 (60gy).
| | | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | | "OCF Canuck" Patient Advocate (1000+ posts)
Joined: Sep 2006 Posts: 1,357 Likes: 5 | Sorry for the diagnosis and welcome to the site. I know you will be bombarded with questions, such as size of tumour, location of the tumour, staging of tumour, where are you being treated - are you at a Comprehensive Cancer Centre (CCC), what is the doctors treatment plan - aside from surgery will you have radiation and/or chemo? ETc, etc. By the time we are done, we might not know your shoe size, but you might as well give that info up right away as we will probably ferret it out sooner or later! We have alot of people on this site who are very experienced in treatment and will provide you with some great questions to ask.
Feel free to post how you are feeling as well. This is an awesome spot to share those fears that only those who have been there can understand.
We look forward to hearing more from you soon.
Donna
Last edited by Pandora99; 10-26-2009 10:14 AM.
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | | Joined: Aug 2009 Posts: 90 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Aug 2009 Posts: 90 | Dear Meanne, so sorry to hear your news. It stinks! I'm assuming they did a biopsy to get the diagnosis. Do you know what kind of surgery you're scheduled for? It's good you find this site, there's a wealth of knowledge and experience and caring to get you though this. As was mentioned in other posts are you with a CCC?
Keep in touch, eat well over the next few days
Nancy
caregiver to spouse, 55 yrs, dx 9/09 SCC BOT, T2N0,nonsmoker, nondrinker, HPV 16+ ,Lt hemiglossectomy, lt modified radical neck dissection, lt tonsillectomy,PEG 11/08 removed 2/09, 30IMRT, CT neg 4/09, neg CT 10/09
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Meanne,
Have you gotten more than one opinion?
Where are you being seen?
Donna mentioned a CCC and that would be my next stop.
I personally would not want my tongue cut out, partially or in any manner, until I knew it was 100% necessary. I would even opt for radiation if it meant saving my tongue.
No node involvement?
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | Sorry you had to join this place, but welcome. I am glad you found us. There are a lot fo people here that have mroe insite than I do. Yes, you will be bomarded with questions and you may not know the answers. That is okay. Make sure you ask lots of questions of your Drs and I would highly recommend getting more than one opinion. I learned that the hard way and am now getting a second opinion before my treatment begins.
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | Joined: Sep 2009 Posts: 148 Likes: 1 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Sep 2009 Posts: 148 Likes: 1 | Hello Meanne, I too send all my best wishes your way. I also had what you have, but I ignored symptoms and the cancer spread into my lymph nodes. The ENT wanted to do surgery right away, thank goodness, I met with my radiologist before I went through with the surgery. I never had the surgery because my radiologist said she could "cure" me with radiation & 4 chemo treatments. Well, so far, so good! I am cancer free. The treatment was not easy, but you do what you have to so you can beat it. Again, like others have suggested, 2nd, 3rd. opinions matter & could make a big difference in your journey. With this said, best of luck, eat to your hearts content (eat a whole bag of potatoe chips for me!) keep us posted. Stay hopeful & positive! Dianne
BOT T3N2M0 No surgery, 38radiation treatments,4 chemo rounds, peg removed 11/08, still have a port. Treatments ended 6/20/08. So far, so Good ! "I know God won't give me anything I can't handle. I just wish He didn't trust me so much !"
*** Admin update --- Dianne has passed away on August 25, 2015 ***
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Meanne,
I am confused by your post. The base of the tongue is different than the lateral border. Between now and Friday, we can answer some of your questions, but we need more facts as stated above.
Getting an opinion from a CCC is more important right now than getting answers from us.
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
| | | | | Joined: Oct 2009 Posts: 5 Member | | OP Member
Joined: Oct 2009 Posts: 5 | thank you all for the kind words, i am also glad i found this sight when i did. i am being seen by dr. padhya at moffitt cancer center in tampa, fl.i was lucky as we live in the area and cn be seen easily. i met with almost everyone on the team pain management, psychiatrist, radiation dr and of course the surgeon. i wi;ll be having a r posterior glossectomy with a r neck dissection and possibly skin grafts/flaps to close the tongue incision. will probably have a feeding tube(dobhoff) to go home with if they do the grafts as they won't want the tongue to move for about a week. surgery should take 2-3 hours and a 2-3 day hospital stay. my surgery is scheduled for 12 noon on thursday,tomorrow and we are going out tonite for all you can eat seafood dinners. my 2 sisters are coming down from tallahassee, they are both nurses as am i. what i really want to know more about is the post op period can you eat,swallow,talk how long should i plan on being out of commission things of that sort and also what the caregiver shopuld expect with all of this. thank you all so much for youirs posts i really appreciate it. oh yeah and what about teeth i have heard that they have to be removed in some cases. my shoe size is 7 1/2!!! | | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Meanne,
Dr Padhya was/is one of my docs at Moffitt. Please be sure to tell him David Hastings said Hi and he needs to start exercising! He's a great great guy.
Who will be doing the radiation?
Any chemo doc?
I would start eating now and not stop until they made me lie down on the operating room table!!
What's the shoe size info for?
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Unless your teeth are in bad condition, you shouldn't need to have any teeth removed. They no longer remove teeth in the field of radiation unless they likely to need extraction down the road. You should have them checked out and have a good cleaning prior to radiation. My periodontist cleaned by teeth every two weeks during radiation which I thought was a bit of overkill, but maybe not.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Eileen,
That had to as brutal as the radiation!
My dentist of many years came by my house twice during radiation just to look in my mouth which I thought was nice of him.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Actually I don't remember the teeth cleaning hurting at all. My tongue was tender as hell but the gums were OK. I didn't get the horrible radiation sores many of you develop although I did have horrible mucous. The dental surgeon that removed my 16 rear teeth also checked my mouth every two weeks because I still had healing to do when I started radiaiton. I kept getting these tiny bone spurs that would push through the gum that he had to file down. Oh fun and games, I'd forgotten all about that part.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Sorry for the memories....
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Oct 2009 Posts: 5 Member | | Member
Joined: Oct 2009 Posts: 5 | Meanne,
You are so lucky your sisters are there for you. Family is so important for you and each other. My mom had a trach for a while post surgery, while everything healed. She can talk now, though she sounds a bit like "Elmor Fud" there is nothing sweeter than my mom telling me she "Wubs" me.!!!! She is healing more every day and is cancer free. We look forward to many years together.
She had complications with her flap, but all is well now. Her diagnosis sounds similar to yours. We all look forward to hearing from you soon.
God Bless you and your family.
Lis | | | | | Joined: Feb 2007 Posts: 1,940 "OCF across the pond" Patient Advocate (1000+ posts) | | "OCF across the pond" Patient Advocate (1000+ posts)
Joined: Feb 2007 Posts: 1,940 | Robs dentist said he had poor dental hygeine and yet when we moved dentist and he was examined by another ,he said his teeth were fine and he kept them all throughout his treatment and afterwards.I think this teeth pulling is a bit outdated now.
Liz in the UK
Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.
Never take your eye off the ball, it may just smack you in the mouth.
| | | | | Joined: Jan 2009 Posts: 97 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Jan 2009 Posts: 97 | Hey,
Dental cleanings were the second most painful thing of the entire experience for me. Slamming a maximum dose of painkillers and the dentist's required antibiotic an hour before going in was the first part on "managing"
Not speaking to anyone as I waited and was escorted back for the cleaning, because I was holding Lidocane Gel in my mouth was the second part. Its easy to ignore the "work" being done while enjoying the "morpine movies" LOL
It was all worth it, I lost 1 tooth. After healing up and some serious dental work I can chomp most anything, just may not be able to swallow it.
I wish I had found the Biotene sooner however ...
UncleVern
ENT conjectures before, no PET approved by HMO. Metastasis 11/06. CT 2/07: mass RT sub-mandibular gland. 7 CM mass/tonsil, base of tongue removed, biopsies 2/07 and 3/07. Vein lost, RT face numb. PET scan: spot in chest, un-investigated. Oral surgery 4/07. 3X Cisplatin and 32X IMRT from 4/07-5/07.
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